"Epilepsy never makes me shy away from life"

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A few days ago I got contacted by a lovely lady called Liz. She is a reporter and done the previous articles on me  and my awareness videos and doing my abseil (if you’ve not read them they can be found by clicking here Abseil article and here Awareness video articles).

In our paper there is a section about people in the town. I always thought people in this section were prominent people of the town though now i have been asked i’m not so sure what their criteria is.
Anyway I was asked and I agreed. I got sent some questions and replied and this is the result.

Click here to read the article online

Planning a Fundraiser

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While I lay awake with pain from the tip of my toes to my head after a severe seizure, what do you think I think about? how unfair life is? how I wish things were different? oh boy how depressed am I?

No … I think about what Im going to do next. I think about what I can do to make a difference. How can I raise more money for epilepsy action next. I think about events, ideas, purple things (the colour for epilepsy is purple). 
Well a couple of weeks ago I was doing just this. I had suffered 3 seizures that day and was laying in bed with a cat by my feet and I had a idea pop into my head. Id read the latest epilepsy action magazine which had a advert for the “epilepsy tea break” I decided I would do a fundraiser around this idea but expand it. I wasn’t content enough with just a plain ld coffee morning.. i needed something more, something that would need organisation and planning. A fundraiser was the perfect idea. 
I broached the subject to mum… knowing she hates events, crowds and anything that needs such organisation people I wasn’t expecting the positive reaction I got however that was it then… Note pad and pen out and I’d started planning. 

The plans  are still in the process of being organised but the event called:

“Jo’s Epilepsy Awareness Tea Party” 

will be taking place on Saturday 19th October 

between: 1pm – 5pm GMT

At: my house…. 4 Mill View Road, Herne, Herne Bay. CT6 7JE

Please come along 

There will be craft stalls including “dream a little dream”: by Lara Simpson
who makes stunning dream catchers 

Epilepsy awareness stall

Crafts by Claire 

Glitter Lining crafts 

Tombola

Refreshments and Cake 

Competitions 

A quiz

Glitter Tattoo’s 

Nail art 

and more. 


More details will be given in due course 

Epilepsy Today Issue 19, September 2013.

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Today I became a published epilepsy advocate. After an interview I gave to epilepsy action they wrote an article and it is published in this months issue 


Epilepsy Today Magazine, Issue 19, September 2013, Page 20 & 21.


Holding my magazine ! 
I am so proud of myself for getting this far in the world of epilepsy awareness in 6 short months of actually speaking out about it. There is a lot further I want to go but for now I leave you with some happy images of me and my magazine article. 

FRONT COVER 


Page 20
                                        
Page 21 
                                       


Pushing boundaries

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It was amazing to see my friends from Australia yesterday. I really enjoyed the catching up we did and it was lovely to see them well and hear all about their travels. However I am paying for having a good fun day yesterday. I didn’t go mad yesterday, I was really very slow in what I did as my head was still in quite alot of pain as were my joints. However I pushed a little and made it to talk and have a cuppa coffee. 
Despite this and being careful and mum doing the preparations and still taking my medication today I am in agony. The pain in my head is much worse, i ache from head to toe and Ive already had 2 seizures today and I think its pain induced. The cluster attacks are more than yesterday and the day before. Im really struggling. Im tired too as last night I was woken many times in pain. After taking my pain meds the sleep is not what I call real – its forced and drug induced and i can still feel the odd stabbing of pain despite being asleep. Its hard to describe.

However was it worth it? Yes. I cannot stay locked away in a darkened room all my life. If i have to live the next however many years of my life like this then Id rather push the boundaries every now and then to do something great than not.

Fun in my life seems to have a price. No matter if  it be having a seizure at the titanic ball or being in more pain than usual because I did more walking or more of whatever. The price is normally paid by mum moaning about how I shouldn’t have done (fill in the blank here) and me saying I would rather live my life and push the limits and pay the price than not have the life or experiences at all.

I think mum can see both sides of the story – or I hope she can. I hope she knows that I don’t do any of these things to annoy her or cause her trouble and Just because I do something she doesn’t agree with it doesn’t mean I think any less of her or do not love her. its not. It because i want to try to be “normal” (whatever that is). I want to live life rather than spend it locked away. 

I love mum dearly. 

You only get one chance at life though and I plan to live it to the fullest I can, and yes I will push the boundaries the next time I want to experience life. 

Don’t loose out on life, you only get one chance and it’s too short for if’s, but’s and maybe’s. 
go enjoy what life has to offer. 


Far away friends

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Today was the first day I’ve got up and dressed in the few weeks I’ve been poorly. I know I’ve missed out a few days from my blog and I will catch up on them when I’m feeling up to it but had to blog about this special event (not me getting dressed but what’s to follow!).

11 years ago I met a man and woman Allan and Pat may who are from Australia. I met them at school, Allan was my D&T teacher for a year. We got on really well and vowed to keep in touch, and we did to this day. Via email, letter, phone, and recently Facebook: 
Today we met up again. I was suppose to go down town with them but as I didn’t feel up to it they were happy to come to mine for a cuppa and chat. We chatted for a couple of hours about this and that and what had been going on in our lives and then once again parted and vowed to stay in touch. 
This is another memory made and to cherish. I value my friends dearly. One day I may meet them on their home ground in Australia but until then we have memories and the contact we promise to keep to keep us going. 
Me and Allan 

Me and Pat 

hospital again & Miracle Dr

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The pain got too bad 

monday morning and I woke up after the night that i thought would never end. The pain was so bad i hadn’t got much sleep all night. mum wrote in her diary “you can see her holding her head and making groaning noises even when asleep”. 
I woke pleading for help I couldn’t go on like this I can cope with alot of pain but this was beyond that. 
I feel so so sorry for mum – she feels helpless like she cant do anything. She doesn’t realise her cuddles and just being there is all I need from her. Just like all my friends. I feel so bad that I cant do stuff with them and that we had so much planned this summer that couldn’t be done but they come over and spend time and they don’t ever say a bad word. I love them so much – they all give me strength.
sometimes though nothing can beat the security of medical staff and sometimes the pain get so so bad and this is where i was now… the pain was where I could no longer cope. 
Mum called the ambulance and I ended up in margate hospital. We waited in A&E an hour before being spoken to by a dr we went through the whole story again. An attack came on and luckily the oxygen helped take the pain down a bit this time. They said they were going to admit me and get me to see the pain team in the next day. After a almost sign of relief that we were going to get some help  1/2 hour later they came and told me i was being discharged…. basically there was no bed space. They said I have an appointment in Dover for the pain team on wednesday. 

I was so so concerned and that was it i was at breaking point. I couldn’t take it much longer. How could i possibly get to dover being in the pain I was in? 
We were sitting outside the hospital now – we had to wait for a friend to come and pick us up as they were not even concerned with how we were going to get home with me in t he stat i was.. I thought the NHS was a caring service…. How wrong i was. 
We eventually got home and the next couple of days nothing really changed. 
Then the day of the Dover appointment came. It was about 1 and 1/2 hours drive from us and I was not even strong enough to be out of bed. We packed the car with pillows blankets and morphine syringes and my other pills and the oxygen and off we went. I needed two syringes on the way there but survived without a seizure. 

Well what can I say I am glad we went. The dr (tim) was lovely. we spoke to him for an hour and he is the first dr to truly believe the amount of pain im going through and understand it. He was not phased by the answers I was giving him to his questions and diagnosed or sure Cluster headache. (google it, and it will say – “the most painful condition known to man” by medical definition.) I was so relieved that someone understood and took notice of what I was saying and experiencing. The verapamil was put up over the next 2 weeks and told to go up a subsequent three times with two week breaks. He also said I could go back onto my old painkillers as well as the stuff I was on now. He also said that in the future he would like to end me to a guy in London called Chong who is a renowned specialist and the top in the country on cluster headaches. He understood that it not practical I go to London now.

We celebrated with a quick stop at macdonads where I had a iced frappe coffee (i love cold coffee – its definitely my fuel) When we got home I was exhausted and the cycle of headaches and seizures continued. 

My epilepsy consultant phoned us that same evening as we couldn’t go to the appointment as it was the same time as this pain specialist… he wants me to see a specialist in London too – a different one who knows about epilepsy in the regions I have mine. he is trying for an appointment ASAP – (joke as recently we have had a letter stating we are on the waiting list for the waiting list – we should receive an appointment in “several months”). 

My epilepsy consultant was really happy of the cluster headache diagnosis though – it was him that first said about it however was getting no back up from my previous consultant. This dr tim who i saw over-rides them so he is really happy that is getting sorted. despite being a slow process. 


Just knowing what we are fighting helps. 





Home at last.

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We arrived home. that night pain levels were obviously still high. Higher i think as I’m sure the morphine i had was not as strong as the hospitals however i was home.. i was happier. 
In the end i think its things like comfort, family and friends that help the healing process. My friends are amazing – they come to my hospital bed and they come to my home but when I’m at home its so much nicer and for my friends who are far away I can FaceTime them at home and seeing them makes me happy. basically life was really bad but better at home.



The next morning I woke to severe pain. I had the morphine and we managed to see the GP. It was a real struggle to get up there but we needed to. The GP prescribed something called M.S.T and was told to take one straight away and then use the oramorph when the pain was really bad. 
I continued to do this for the next 24 hours – i began to itch though – it must be a side effect of the medicine. i managed to sleep again but it was restless sleep. 
I dont know if anyone else has felt like this but i was asleep yet i could still feel the pain – i tried to wake up but couldn’t. i call this Kruger sleep cos its a nightmare ! 

The next few days this all continued – with one change of the GP swapping the MST and oramorph for oxycontin and oxynorm. 
This wasn’t a good change though. The new meds made me feel terrible ill and sick and we had to get the GP to come out again –  gave me an injection and we went back to just the oramorph as the other meds were not agreeing with me. Shame as the pain had been less on the oxynorm. 

The next few days I slept on and off – my oxygen levels occasionally dropping and me still having seizures almost every day on top of this. 


Hospital hell.

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Well Ive not blogged in a couple of weeks because Ive been in and out of hospital. It has not been a nice few weeks either… not that any time in hospital is nice but this couple of weeks experience has been exceedingly bad. Ive had everything from poor care to route staff and being discharged from hospital in severe (and i mean severe climbing walls pain!). Thats where I am at the moment. 


It all started Tuesday 29th July. I had a really bad day trying to keep my headache pain down, I had taken several doses of oramorph and had been on the oxygen a lot. It was helping to keep the pain down but the pain was not cope’able.  I finally managed to go to sleep in the late evening. I was so tired because pain is so draining. Id also had many seizures that day which in themselves are draining to a great degree. The next day (30th July) I woke with the pain again, Struggling through with the oramorph, oxygen and still having seizures I couldn’t go on any longer. The seizures got worse and mum called the ambulance. I was given morphine through a cannula in my hand and taken to hospital. By now the hour was late and we were into Thursday morning. 
The pain started to build up again, all i had done was move a couple of steps!. I was given more morphine through my drip. A nice Dr also managed to get blood from my other hand…. so this point I had 2 needles in ! 



I stayed in the CDU for a few hours where I was given drips to keep my blood pressure up and medication for the seizures and pain through the drip too. 
After I was moved to treble ward (the neurology ward). I was put in a side room and given oramorph when the pain was bad. However things were not all that easy. It was really difficult because the nurses were not all nice and happy and easy going.  The pain relief was also slow… Id have to wait up to half an hour in screaming pain before the nurse finally administered pain relief. It was hard. 
Friday the neuro team came and I was prescribes codeine. Varapamil (a strong heart drug that is supoes to help cluster headaches too) was discussed and prescribed. I was also put on the video telemetry for a few hours to see if they could see if the seizures came from a different area when I was in pain to not in pain…. I never did hear the result of that. 



The Next day the weekend dr came and he was lovely (really explained things and took his time to help). He prescribes Naproxin to try and sumatriptain. Id tried sumatriptain before and I wasn’t really happy about trying it again as It sent me into seizures but with the pain this bad I was out to try anything and everything. 
The naproxin was taking too long to kick in – i was spending up to one hour in severe pain before it would help by which time id either had to have oramorph or had started having seizures. 
Later the Dr came back and suggested I try a sumatriptain injection. I agreed. The nurse hadn’t done one of these injections before (i had) so I let her do it as I talked her through the self injecting gadget ! The drug kicked in pretty fast as I get a tingling sensation all over my head and my arms felt heavy…. But then it all went black as the seizures started. The drug made me feel very very ill. It was the exact same effect it had taken on me almost 10 months ago. The next day I just went from one attack to another. I was weak, not eating and very down. Pain is exhausting. 
Dr Wan had written on my notes that if i was having a bad attack oxygen was to be given and then Naproxin within 15 minutes then or if longer than 15 minutes…. Morphine was to be given. 3am in the morning and the nurse took such a long time (45minutes ) in administering the naproxin it had gone beyond that stage and I needed oramorph.  
I was in agony, I got angry that it was taking such a long time to get any pain relief and i demanded to see dr wan (who had said to call on him any time while he was on duty. The  nurse refused to call the dr and insisted on the night manager who never did come until 4am when the nurse did call Dr wan and he happily came. 
Naproxin was withdrawn as the benefits we nil because it didn’t kick in soon enough. Oxygen and morphine was all that was left. My notes now said oxygen for 15 minutes then if ineffective morphine to be given immediately. This way i was only enduring 30 minutes of pain rather than over 1 and a half hours. 


The next day i encountered a serious bad judgement of the staff of me and my condition. I suffered a cluster attack so grabbed the oxygen mask and started using the oxygen as dr wan had told me to. within 5 minutes the sister of the ward (who i had not even been introduced to) came into the room and told me to get off the oxygen. Shouting that its toxic and i shouldn’t be having oxygen. Not what you want to hear when your in screaming agony and doing exactly what the dr had told you too. I told the sister the treatment plan but it did not stop her. I was in tears as the pain was so bad and the situation was not good. Thank god for mum being with me. I love her to bits. 
The dr came at lunchtime and things were discussed. He admitted the treatments were trial and error due to the two conditions clashing. we were willing to go along with the plan  – we needed help.
Since being in hospital sleeping and rest was a big problem, i was getting very little and was exhausted. the noise levels we really high and 2 nights running a screaming patient had been put into the room next to me. 

One night I had a sudden pain in my chest. It was sharp and crushing. The nurse done my observations my oxygen level was 82%. My blood pressure 154/78 ! this for me was not normal yet they didn’t seem bothered. Mum and I were both concerned as i was on Verapamil (for my clusterheadaches yet was a heart drug). She did a ECG and sent for the on call dr to see. The dr then came up and suspected something called costrocondraditis – confirmed by an xray that i was sent for later that night. 
When I came back from xray the nurse was asked by the dr to take bloods. When the nurse came she looked at my arms. I asked her to go in the back of my hand as my veins in my arms were sore and rarely if at all in the past 4 years have managed to give blood. She refused and went in my arm. She kept prodding the needle in and out (it was extremely painful), still not able to get blood she kept trying… it had been over 10 minutes and i asked her to remove the needle – she refused. I was in too much pain asked a further 3 times and finally she did. I said try the back of my hand cos people can get blood from there…. the nurse threw the needle into the bowl and stormed out…. I never did get my blood test. 

The next day I had, had enough. I wanted to go home – i was exhausted , no sleep and staff being less than caring was not helping my situation. 
I have oxygen and morphine at home and could do the same care there and have sleep. we spoke to the dr who obviously didn’t want me to leave but understood it was the only way for me to rest.

I self discharged and came home – i felt like i could sleep for a week.
the dr had told me the treatment plan so i could continue that at home. 

my videos so far

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This one was my lastest 
I was going through a really bad time when I made this video
I found it helped and also helped mum and me do something together as she helped film. 
XXX thanks mum XXX
This is my google doodle video to try and get us all a google doodle for epilepsy.
The first video I did to speak out about epilepsy. 

My experience with epilepsy